Reversing clitoral fusion/shrinkage
Posted , 22 users are following.
I have recently been diagnosed with Lichen Sclerosus. My biggest issue currently is the fact that my clitoris has apparently vanished! I can still feel it deep down but it seems as though it has been buried under pale skin with a very thin line showing a faint join (no webbing). Both my GP and consultant are very apathetic about this (I bet they wouldnt be if it was their wife!!!). My GP even suggested that Clobetasol would probably 'sort it out'. My questions are:
Can Clobetasol actually fix my clitoris issue? His theory was that the steroid would thin the skin here and eventually re-reveal my lost clitoris - is this even possible?? It sounds dubious.
I have read about testosterone/estrogen creams being able to restore vulval tissue - is this the same for LS patients? Would I gain any benefit?
Are there any methods for me to manipulate the skin to gradually pull it apart?
Is surgery an option and if so how painful is it? Both my consultant and GP seem totally against any surgical intervention which frustrates me greatly. Is there any private clinics in the uk that i could refer myself to for this?
Thanks all
1 like, 45 replies
Guest Thedramalama
Posted
Hello ,
From what I have read here on this forum and in various journals, the clobetasol will not do a lot to bring the clitoris back but that depends on what happened to it. IF it is covered up by fused labia, it is possible to unfuse it. If it is resorbed along with the labia, then, unfortunately, I have not read where it will come back even with clobetasol. Some women here have used borax solution dribbled down over the area and found success, some have used EmuAid, a product from a company in Florida (you can google and find) and some have used baking soda in water, (also google and find). It is important to keep it clean but no body washes. Try natural soap like olive oil soap. Coconut oil is also an antibacterial emoluent that's easy to get and pretty cheap compared to the hundred we spend on seeing doctors who do nothing. I urge you to keep after it and don't give up!
Thedramalama
Edited
Thank you all so much. Eggbiscuit - I'm not sure if my clitoris has been resorbed or just covered up by skin - I can still 'feel' it if that makes sense, as though it is there but hidden, so I hope in that case it is the former rather than the latter (which to me seems horrifying!). I will do as Vero suggests and write to her amazing doctor. I could always book a hotel for a few nights if it means getting the right treatment. In terms of scarring, I am hopeful I would be ok having given birth naturally 12 years ago and healing well, also I have had cysts burst/lanced and heal well down there despite my LS (another joyful experience I have had!) so fingers crossed i may be a candidate for surgery. Thank you all again, I dont feel as overwhelmed and lonely as i did thanks to your advice
Thedramalama
Edited
Just thought i would mention this study i have found that illustrates a high success rate for surgery which may be helpful for anyone reading this thread - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4721030/
I will take this as evidence to my doctors. It also sounds like a relatively minor procedure which is heartening
beverly52803 Thedramalama
Edited
I wonder how long this surgery was being performed before it occurred to someone to find out how effective it was. It has never been clear to me why follow up is not required protocol after all medical treatment. Doctors have absolutely no idea if what they have done or prescribed was successful unless the patient returns which is often not the case, particularly if the patient is unhappy with the result. Why not just hand a patient a form to fill in and send back? That info could be entered into computers and we would all be the better for it. I realize it would not be an official study, but it would certainly be helpful, much needed feedback.
Vero84 Thedramalama
Edited
This is the surgery I had and I can highly recommend it.
Debbz1989 Thedramalama
Edited
Hello Dramalama.... I got diagnosed with LS when I noticed my clitoris disappearing. It looked like it was receding... and the skin around it was turning white. 😦 I was put on Clobetasol after my biopsies came back positive for LS. My doctor told me the clob would "bring my clitoris back." Weeeeelllll... that didn't necessarily happen! The clobetasol turned my skin back to "pink" instead of white... and I did/do rub clobetasol alllll over the clitoris and hood. (My hood is fused to the clitoris.) The fusing wasn't coming apart... UNTIL I started soaking in borax baths. When I'd soak in borax - I would pull and stretch the skin away from the clitoris... and it started unfusing. It hasn't totally unfused, but its SO MUCH BETTER. My doctor also gave me estrogen cream to put just on my clitoris (even though I haven't gone thru menopause yet) because the sensitivity in my clitoris had diminished. 😦 Well... I'm happy to say that the borax baths helped make my clitoris more sensitive - and the estrogen helped, too. I'm able to achieve an orgasm a little easier than before I did all of this. My orgasms aren't as AMAZING as before... but at least I'm having one sometimes. You're so young.. I hope you get your clitoris back... and feel better soon! ❤️
Thedramalama Debbz1989
Edited
Thank you so much Debbz - ive been reading about borax and will see if i can get some here in the uk. Im willing to try anything! I wonder how it works with unfusing skin i.e. the actual mechanics of it. Either way its worth a go!
BlueMoon123 Thedramalama
Posted
Hi, im in the UK and am looking to try Borax too, my clitoris is there i think but its white and im not sure if i have a clitoral hood as i can just see a little nub, but never really inspected it before all this!
ive never really had visible labia minora as far as i remember so i dont think mine have disappeared but its definitely white in the area above the clitoris and there are also white patches just below it on the inside bits which i think is called the vestibule, which im sure i never had before.
i also get red marks and blood blistering that comes and goes but always in the same place in a line above the clitoris i dont know if that is friction or what, it seems to just appear then takes weeks and weeks to go
anyway i was just about to order borax so ill let you know how i get on if you like
i just wish it would go pink again it looks so awful white 😦
BlueMoon123 Debbz1989
Edited
hi debbz if you dont mind me asking how long did it take for the clobetasol to turn your skin back to pink x
Vero84 BlueMoon123
Edited
I looked exactly the same before my operation, and I also didn't ever see labia minora. My doctor told me it is because that actually fused together above the clitoris. After my operation to expose the clitoris the skin is now pink there as the diseased layer got removed. Best thing that happened to me honestly. I highly recommend the op to anyone who suffers from fusion.
BlueMoon123 Vero84
Posted
wow thats crazy cos ive literally never had them! like even as a child
ive been under gynaecologists before and theyve never said anything
ive not been referred to a dermatologist or anything though i need to go back to the doctors as it was only the sexual heath clinic that told me it was LS
That was about 4-5 years ago they gave me the steroid ointment but no instructions or follow up so i kind of left it
beverly52803 BlueMoon123
Posted
In an attempt to put a positive spin on your experience with doctors that kind of negligence may be due to ignorance rather than incompetence. However, any doctor knows that steroids are powerful drugs and patients must be given specific instruction on their use. I'm assuming in the UK and don't have a lot of choice re who you get to see but if you do have any you need to see a vulval, (vulvar?... I'm never sure of the word) skin specialist be it a gynecologist or a dermatologist.
Re labia minora, maybe it's possible some women are born without them. I think I'd research that. Did you have problems with discomfort as a child? Are you post menopausal now?
Vero84 BlueMoon123
Edited
Same here, I have been to plenty of doctors, no one ever said anything. For a while I even thought that was normal. I even asked if I could have it fixed with surgery as it caused me pain while having sex as the skin was sensitive and prone to tearing. The answer was that I should focus on my G spot. Can you imagine? Then I met the doctor at Circle Bath and she literally changed my life. I am 36 and remember having very intense itching when I was a child. Thats when the fusion happened apparently. When I hit puberty the itching went away but the white skin and fusion remained. Until last year. Can't believe I had to live with it so long, especially when it is such an easy fix. More doctors should know how to help ladies like us, not just arrogantly dismiss this very uncomfortable and sometimes painful disease.
Debbz1989 BlueMoon123
Posted
Hi BlueMoon... i don't mind you asking me anything! 😃 Ask away! I can't remember who long it took for it to be pink, but my doctor put me on Clobetasol and told me to put it on every night before bed... and then I had a 6 month follow-up with her... by the 6 month follow-up - I was fully pink and no more white patches (and believe me - I had some large white patches on my butt cheeks and around my clitoris and down to my vaginal opening.) So it took less than 6 months to get back to pink with nightly clobetasol use. 😃
Debbz1989 Vero84
Posted
Vero84 - if you don't mind me asking... after your surgery - were you given instruction to put clobetasol all over that area daily, to avoid it re-fusing? Or how do you keep it from re-fusing? I hear it can fuse back up - even after surgery. 😦
BlueMoon123 beverly52803
Posted
Hi no i didnt have any problems as a child that i can remember and not post menopausal not even had it (im 42)
even now i dont get any of the itching at all, i only noticed this when i looked one day and i had red marks and like blood blisters
we just get referred by our doctor but i will ask to see a dermatologist i will have to go through my doctor first though
BlueMoon123 Vero84
Posted
wow thats crazy, doctors are seriously so insensitive sometimes.. see i never had any issues as a child that i remember! no whiteness until the last few years so who knows!
BlueMoon123 Debbz1989
Edited
ok thank you! i think mine has been whiteish a few years so it may not go away but hopefully trying to stop it getting worse, just sick of getting these recurring red marks and blood blisters all the time 😦 they dont even hurt just looks unsightly.
how much did you use as ive heard conflicting reports of a half pea size (but that would not be enough to cover all the areas..) and a finger size and also to rub it in for 90 seconds but i presume that is all over and not 90 seconds per area x
Vero84 Debbz1989
Edited
Yes, I had to use Clobestasol daily, then gradually reduce it. I was also instructed to use olive oil or coconut oil multiple times a day as dry, sticky skin is more prone to fusing. My doctor also told me that I should part my labia (pull the labia majora up and apart) as a routine exercise at least one a day when I am sitting on the toilet. I can actually see my clitoris when I am doing that so it's easy to keep things in check but I also use a mirror sometimes to be sure. My surgery was in November last year, recovery took about 10 days. My LS was dormant until last year, and I haven't had itching since I was a kid. What I feel now is the ocassional hot sensation and soreness. It's weird as the area is not sensitive to the touch, it's just aches. LS was confirmed by biopsy.
Vero84 BlueMoon123
Posted
A lady here on the forum gave me a great tip applying the cream. I use half a pea size too. First I use Emuaid, that I rub in for a minute to the whole area. This is also a godsend when I feel sensitive during the day. Then I apply the steroid cream. As it's thicker, on its own you feel like you need more, ,however it blends very well with Emuaid. I think you could use simple olive oil too, just a few drops. Ever since I tried this I use it like this, works really great. You shouldn't use a lot of steroid cream, it's really potent.
BlueMoon123 Vero84
Posted
ok thank you! i have emu oil would that work
just seems like with a pea size as soon as i start rubbing it in its gone and then i have none left
Vero84 BlueMoon123
Posted
I am sure emu oil would work, that's actually an ingredient in Emuaid. Also, Emuaid lasts ages, I bought mine almost a year ago and I still have half the pot. It's a lifesaver, maybe once you run out of the oil give it a try. A bit pricey but worth it. x
Debbz1989 BlueMoon123
Posted
BlueMoon123 - I probably use more than a pea size... I use about 1/2 a pea size just on my clitoris area. Then I put a little more (on a different finger) and rub it down the sides of my vulva area, then I put a little more again - and rub it in the perineum/anal area. So I probably use more like 1 1/2-2 pea size.
I don't rub it in for 90 seconds... I rub it in for a bit - and that's it.
Debbz1989 Vero84
Edited
Vero84 - thank you for the info! 😃 I use a moisturizer every day as well...
I also squat over a mirror every week (or more) to make sure everything looks ok and no major changes.
helena_castel Vero84
Posted
Vero84,
Can you please share the doctor's information (Circle of Bath)? I once saw the post where I think you mentioned her name but am unable to locate it.
Do you think she would see patients from outside the UK? If she doesn't take insurance, what do you suspect her cost would be these days for treatment?
Thank you!
Vero84 helena_castel
Posted
Hi Helena,
of course. Her name is Dr Aisha Qureshi and she is in Circle Bath Hospital in the UK. I'm sure you could see her even if you're not local but you can only use insurance that is from the UK I think. Circle Bath is a private hospital so if you don't have insurance you can pay for the treatment yourself. I think it's still a lot cheaper than the USA.
I don't remember exactly as my insurance paid but to see her for an examination and consult I think it was around £165. I know my operation including the initial consult, 2 follow ups, day stay in the hospital came to around £1200. It's a lovely hospital and everyone is very kind. I think they give you an option to spread the cost. Best thing would be to give them a call, they can tell you everything. 🙂
Where are you based?
ro08248 Vero84
Posted
do you mind if i ask where you got the operation?